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Pancreaze - Update

R

Ratatosk

Administrator
Staff member
So Pancreaze was approved by the FDA on April 13th. Was made available by the manufacturer on July 31st and today I visited with the pharmacy about ordering some for DS and they sent a fax to our doctor, who approved the change and then.....

BCBS said it was a nonformulary and that ONLY Creon has been approved -- not even zenpep is allowed yet -- and we could use that instead OR pay half for a 3 month supply to which our cost would be $1900!

With DS' digestive issues, I'm a little gunshy with trying something new. He may be perfectly fine, but school starts in a week and a half and I don't want him to possibly have any gastrointestinal issues at the start of the school year at a brand new school.

GRRRR! So, we have to have our doctor write a letter requesting an exception be made. And we didn't have any luck with that last year with DS' actigall, so I'm pretty annoyed right now; however, we're thinking our attorney may need to get involved. Typical it's a friday so BCBS is now closed for the weekend as is our doctor's office. So I'll have to wait until Monday morning.

We DO have enough pancrease MTs to get him by for awhile longer. But I suspected something like this might happen, after some friends of mine had issues last year with their switch to the new creon.
 
R

Ratatosk

Administrator
Staff member
So Pancreaze was approved by the FDA on April 13th. Was made available by the manufacturer on July 31st and today I visited with the pharmacy about ordering some for DS and they sent a fax to our doctor, who approved the change and then.....

BCBS said it was a nonformulary and that ONLY Creon has been approved -- not even zenpep is allowed yet -- and we could use that instead OR pay half for a 3 month supply to which our cost would be $1900!

With DS' digestive issues, I'm a little gunshy with trying something new. He may be perfectly fine, but school starts in a week and a half and I don't want him to possibly have any gastrointestinal issues at the start of the school year at a brand new school.

GRRRR! So, we have to have our doctor write a letter requesting an exception be made. And we didn't have any luck with that last year with DS' actigall, so I'm pretty annoyed right now; however, we're thinking our attorney may need to get involved. Typical it's a friday so BCBS is now closed for the weekend as is our doctor's office. So I'll have to wait until Monday morning.

We DO have enough pancrease MTs to get him by for awhile longer. But I suspected something like this might happen, after some friends of mine had issues last year with their switch to the new creon.
 
R

Ratatosk

Administrator
Staff member
So Pancreaze was approved by the FDA on April 13th. Was made available by the manufacturer on July 31st and today I visited with the pharmacy about ordering some for DS and they sent a fax to our doctor, who approved the change and then.....
<br />
<br />BCBS said it was a nonformulary and that ONLY Creon has been approved -- not even zenpep is allowed yet -- and we could use that instead OR pay half for a 3 month supply to which our cost would be $1900!
<br />
<br />With DS' digestive issues, I'm a little gunshy with trying something new. He may be perfectly fine, but school starts in a week and a half and I don't want him to possibly have any gastrointestinal issues at the start of the school year at a brand new school.
<br />
<br />GRRRR! So, we have to have our doctor write a letter requesting an exception be made. And we didn't have any luck with that last year with DS' actigall, so I'm pretty annoyed right now; however, we're thinking our attorney may need to get involved. Typical it's a friday so BCBS is now closed for the weekend as is our doctor's office. So I'll have to wait until Monday morning.
<br />
<br />We DO have enough pancrease MTs to get him by for awhile longer. But I suspected something like this might happen, after some friends of mine had issues last year with their switch to the new creon.
 
M

mamaScarlett

Active member
Pancreaze

From what I've heard your docs will have to write a letter of necessity of some type to get coverage of pancrease. Ask your social worker pronto.

I can't tell you what to do or whether or not Creon will work for your ds'-but I can only tell you that switching may or may not be fine. I was told 'oh Creon will be fine, its the same thing...no problem'..Well, not true. I've been in agony after 1 month of Creon (since I temporarily lost my Pancrease too).
It totally messed my bowels up. Its been agony trying to get back on track.

I guess thats logical after being on Pancrease for 26 years! Now I got my Pancreaze-I'm still not 100% yet.

Fight to get the pancreaze-make a stink, keep calling and calling-Thats what I would do. I strongly believe your docs have some pull here for you.
 
M

mamaScarlett

Active member
Pancreaze

From what I've heard your docs will have to write a letter of necessity of some type to get coverage of pancrease. Ask your social worker pronto.

I can't tell you what to do or whether or not Creon will work for your ds'-but I can only tell you that switching may or may not be fine. I was told 'oh Creon will be fine, its the same thing...no problem'..Well, not true. I've been in agony after 1 month of Creon (since I temporarily lost my Pancrease too).
It totally messed my bowels up. Its been agony trying to get back on track.

I guess thats logical after being on Pancrease for 26 years! Now I got my Pancreaze-I'm still not 100% yet.

Fight to get the pancreaze-make a stink, keep calling and calling-Thats what I would do. I strongly believe your docs have some pull here for you.
 
M

mamaScarlett

Active member
Pancreaze

From what I've heard your docs will have to write a letter of necessity of some type to get coverage of pancrease. Ask your social worker pronto.
<br />
<br />I can't tell you what to do or whether or not Creon will work for your ds'-but I can only tell you that switching may or may not be fine. I was told 'oh Creon will be fine, its the same thing...no problem'..Well, not true. I've been in agony after 1 month of Creon (since I temporarily lost my Pancrease too).
<br />It totally messed my bowels up. Its been agony trying to get back on track.
<br />
<br />I guess thats logical after being on Pancrease for 26 years! Now I got my Pancreaze-I'm still not 100% yet.
<br />
<br />Fight to get the pancreaze-make a stink, keep calling and calling-Thats what I would do. I strongly believe your docs have some pull here for you.
 
R

Ratatosk

Administrator
Staff member
Pancreaze

I thought of you when they called and said only creon was approved. With his bowel obstruction last summer, I don't want to mess around with finding/trying a different kind of enzyme.

This summer we're finally seeing a growth spurt --height and weight. Don't want to have to go backwards.

Our experience with filing for an exception last fall for the actigall was a complete and utter failure. Fortunately he gained enough weight to be put on capsules. Our battle with getting his synagis shots for RSV covered went on for several weeks until our attorney sent a fax and he was approved within minutes. So we may have to do something similar.
 
R

Ratatosk

Administrator
Staff member
Pancreaze

I thought of you when they called and said only creon was approved. With his bowel obstruction last summer, I don't want to mess around with finding/trying a different kind of enzyme.

This summer we're finally seeing a growth spurt --height and weight. Don't want to have to go backwards.

Our experience with filing for an exception last fall for the actigall was a complete and utter failure. Fortunately he gained enough weight to be put on capsules. Our battle with getting his synagis shots for RSV covered went on for several weeks until our attorney sent a fax and he was approved within minutes. So we may have to do something similar.
 
R

Ratatosk

Administrator
Staff member
Pancreaze

I thought of you when they called and said only creon was approved. With his bowel obstruction last summer, I don't want to mess around with finding/trying a different kind of enzyme.
<br />
<br />This summer we're finally seeing a growth spurt --height and weight. Don't want to have to go backwards.
<br />
<br />Our experience with filing for an exception last fall for the actigall was a complete and utter failure. Fortunately he gained enough weight to be put on capsules. Our battle with getting his synagis shots for RSV covered went on for several weeks until our attorney sent a fax and he was approved within minutes. So we may have to do something similar.
 
R

Ratatosk

Administrator
Staff member
Pancreaze

According to our insurance formular listing, these are the only ones available -- 3 discontinued, 2 generics and one approved about a year ago. Zenpep isn't listed either. Grrrr!

CREON - pancrelipase delayed-release caps
LIPRAM UL - pancrelipase delayed-release caps
PANCREASE MT - pancrelipase delayed-release caps
PANCRELIPASE tabs, 30-8-30
ULTRASE/MT - pancrelipase delayed-release caps
VIOKASE - pancrelipase powder, tabs
 
R

Ratatosk

Administrator
Staff member
Pancreaze

According to our insurance formular listing, these are the only ones available -- 3 discontinued, 2 generics and one approved about a year ago. Zenpep isn't listed either. Grrrr!

CREON - pancrelipase delayed-release caps
LIPRAM UL - pancrelipase delayed-release caps
PANCREASE MT - pancrelipase delayed-release caps
PANCRELIPASE tabs, 30-8-30
ULTRASE/MT - pancrelipase delayed-release caps
VIOKASE - pancrelipase powder, tabs
 
R

Ratatosk

Administrator
Staff member
Pancreaze

According to our insurance formular listing, these are the only ones available -- 3 discontinued, 2 generics and one approved about a year ago. Zenpep isn't listed either. Grrrr!
<br />
<br />CREON - pancrelipase delayed-release caps
<br />LIPRAM UL - pancrelipase delayed-release caps
<br />PANCREASE MT - pancrelipase delayed-release caps
<br />PANCRELIPASE tabs, 30-8-30
<br />ULTRASE/MT - pancrelipase delayed-release caps
<br />VIOKASE - pancrelipase powder, tabs
 
M

mamaScarlett

Active member
Pancreaze

This makes me so angry!!! To hear that anyone can't get the drug they need bc of these companies.
sigh, Well-Have you pushed the issue with your cf center social worker yet to see if/how they can help?
 
M

mamaScarlett

Active member
Pancreaze

This makes me so angry!!! To hear that anyone can't get the drug they need bc of these companies.
sigh, Well-Have you pushed the issue with your cf center social worker yet to see if/how they can help?
 
M

mamaScarlett

Active member
Pancreaze

This makes me so angry!!! To hear that anyone can't get the drug they need bc of these companies.
<br />sigh, Well-Have you pushed the issue with your cf center social worker yet to see if/how they can help?
 
R

Ratatosk

Administrator
Staff member
Pancreaze

Our local clinic social worker is a waste of skin. Unless I want to talk about my feelings and coping with being a parent of a child wcf. DH was just told to call our insurance company to see what they suggest.

This is the same individual who told us when DS was diagnosed that we made too much money to be eligible for any programs and we later found that all children wcf in our state are eligible for Medical Assistance regardless of income until they turn age 3. We found this out when DS was 4.
 
R

Ratatosk

Administrator
Staff member
Pancreaze

Our local clinic social worker is a waste of skin. Unless I want to talk about my feelings and coping with being a parent of a child wcf. DH was just told to call our insurance company to see what they suggest.

This is the same individual who told us when DS was diagnosed that we made too much money to be eligible for any programs and we later found that all children wcf in our state are eligible for Medical Assistance regardless of income until they turn age 3. We found this out when DS was 4.
 
R

Ratatosk

Administrator
Staff member
Pancreaze

Our local clinic social worker is a waste of skin. Unless I want to talk about my feelings and coping with being a parent of a child wcf. DH was just told to call our insurance company to see what they suggest.
<br />
<br />This is the same individual who told us when DS was diagnosed that we made too much money to be eligible for any programs and we later found that all children wcf in our state are eligible for Medical Assistance regardless of income until they turn age 3. We found this out when DS was 4.
 
H

hmw

New member
Pancreaze

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>
According to our insurance formular listing, these are the only ones available -- 3 discontinued, 2 generics and one approved about a year ago. Zenpep isn't listed either. Grrrr!


CREON - pancrelipase delayed-release caps
LIPRAM UL - pancrelipase delayed-release caps
PANCREASE MT - pancrelipase delayed-release caps
PANCRELIPASE tabs, 30-8-30
ULTRASE/MT - pancrelipase delayed-release caps
VIOKASE - pancrelipase powder, tabs</end quote></div>
Sounds like a formulary they released for 2010... obviously at the beginning of the year, before all the changes took place. They need to update it just a little!!

Oh that's inexcusable, what that social worker told you when Max was born. Think of all the money you could have saved on copays, deductibles, etc... CF is an expensive disease. You should have been able to make use of that program while you had opportunity to do so and it's part of their JOB to know about things like that! <img src="i/expressions/face-icon-small-mad.gif" border="0">
 
H

hmw

New member
Pancreaze

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>
According to our insurance formular listing, these are the only ones available -- 3 discontinued, 2 generics and one approved about a year ago. Zenpep isn't listed either. Grrrr!


CREON - pancrelipase delayed-release caps
LIPRAM UL - pancrelipase delayed-release caps
PANCREASE MT - pancrelipase delayed-release caps
PANCRELIPASE tabs, 30-8-30
ULTRASE/MT - pancrelipase delayed-release caps
VIOKASE - pancrelipase powder, tabs</end quote>
Sounds like a formulary they released for 2010... obviously at the beginning of the year, before all the changes took place. They need to update it just a little!!

Oh that's inexcusable, what that social worker told you when Max was born. Think of all the money you could have saved on copays, deductibles, etc... CF is an expensive disease. You should have been able to make use of that program while you had opportunity to do so and it's part of their JOB to know about things like that! <img src="i/expressions/face-icon-small-mad.gif" border="0">
 
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